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135456 tn?1301441224
Haven't visited the board in quite some time but....
was wondering if people here have begun to add Alinia to standard treatment? I did a few years back and it worked. I had treated 3 times before to no avail but the  4th time with Alinia added it worked. just wanted to pass this info along. Ask your docs about it. I was a guinea pig when i tried it and probably one of the first in this country to use it.
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1579934 tn?1431272511
Thanks Bill, just want to find all options available.
Rhonda
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I asked my husband's Dr./P.A. if it would be possible to get Alinia to go with the Teleprevir cocktail as it made his interferon response so much better than without.  She said it was not likely, because of possible drug interactions.  If anybody else hears something different, I'd like to know. He gets the gastric upset SX  from it and it never really got better during the 15 months he treated, but it probably would increase his chances of Teleprevir getting him an SVR.  I know people that had no gastric upset at all from the Alinia.
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we are using alinia on hbv too, we use 2g and 2.5g daily dose every 4hrs to get same effect as low release tabs (since alinia stays in the blood only about 5 hrs and after 7hrs is so low that the effect is lost) and those with sides balance with continuous probiotics.

i use lactobacillus reuteri (in europe product's name reuflor), i choose this because i saw it combo with alinia for a trial on end stage cirrhosis encephalopahty (don t know if i wrote it correct) and i had problems in the first 6 months on higher doses than 1g

on our hbv experience we noticed that some tollerate any dose and some need probiotics but after 1 year of alinia comboed with antivirals my gut can go on any dose without probiotics, it is kind of it has addapt to it and i just take prob again for some days when i see an increase of stool frequency

hope this helps for those with gastro sides, we didn t experience any other sides and those with gastro are very very few
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Do you have any studies, abstracts or documention which shows the addition of Alinia will definately increase the chances of SVR with Telaprevir, Boceprevir or any DAA currently in trial stage?  I've seen it stated by some that the addition of Alinia may have enhanced the ability to reach SVR with the current standard of care.  However, I haven't seen any studies which prove that beyond a doubt and curious to know why the world wide hepatitis medical community hasn't incorporated Alinia as part of the treatment regime.

With Boceprevir, gastro problems, sometimes severe are documented as one on the side effects.  Do you think it advisable for anyone who is considering treatment with Boceprevir to add Alinia as part of treatment protocol?  

The addition of a DAA with the current standard of care changes the entire landscape of treatment and in my opinion I would not add another agent to triple therapy because it was stated by those who consider themselves knowledgable yet have no experience with the DAA's.  Because Alinia has not been studied as an adjunct with triple therapy or proved to be an effective agent which enhances one's ability to acheive SVR I don't see how anyone can say it it so, especially this early in the DAA game.
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  As someone who will be treating down the road with a DAA , personally., I would not think about adding something else unless  it was well documented to increase chances even further...fearing it may interact and make the DAA less affective.

As Dora Explora.mentions ..the landscape changes entirely with these new meds,and what was once used by  people retreating with SOC, to hopfully gain any advantage possible,has to be looked at as a total unknown...just IMHO
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419309 tn?1326506891
stef2011:
"saw it combo with alinia for a trial on end stage cirrhosis encephalopahty..."
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Would be very interested in reading about the details of that trial, if you have any pertinent information or links to share, it'd be much appreciated!

DoraExplora:
" Do you think it advisable for anyone who is considering treatment with Boceprevir to add Alinia as part of treatment protocol?"
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Odds are significantly increased for the *general* hcv population, so perhaps moot point for most, but for cirrhotic geno 1s or 4s who are repeated non-responders or relapsers, expanding on protocol may be the difference between life and death.  Advisable or not, where my husband sits today, it doesn't seem like such a bad proposition. Gastro problems are a small price to pay for a cirrhotic as my husband is if it gets you to SVR.  It will certainly be interesting to see all the data on the variables (Alinia, tx extension, ILB, geno 2-4, etc.) and how they play into tx approaches once Boce/Tela hit the market.

Ev:
Hubby's not scheduled to meet with the viral Hep doc for a while, but I know I've been itching to ask the question about adding PI when available... bigger fish to fry at the moment, but the plan is to pose that query at the next visit.
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"Do you have any studies, abstracts or documention which shows the addition of Alinia will definately increase the chances of SVR with Telaprevir, Boceprevir or any DAA currently in trial stage? "

I didn't see anything where it was suggested that it DOES increase the chance of SVR with Tela/Boce etc.  All that's been said so far was a query to a doctor asking what was thought to be the possibility of adding Alinia to Tela and a response from the doc that it wasn't likely because of possible drug interactions.  Pending further studies with Alinia and Tela/Boce, I wouldn't discount it as a possibility if results are good.  For many, it wouldn't be necessary as the results with Tela/Boce are so good for treatment naive however it might be useful with further study for non-responders.

" I've seen it stated by some that the addition of Alinia may have enhanced the ability to reach SVR with the current standard of care.  However, I haven't seen any studies which prove that beyond a doubt and curious to know why the world wide hepatitis medical community hasn't incorporated Alinia as part of the treatment regime. "

That's a curious statement considering Alinia with SOC has been in clinical trials for awhile BECAUSE it shows an improvement in SVR rates throughout the STEALTH C1, C2 and C3 trials and will go on to Phase III due to the results shown.  Drug companies don't bother to keep a drug going through trial phases if it shows no promise, they throw their resources behind the ones that do.

STEALTH C-1 results

http://www.hivandhepatitis.com/2008icr/easl/docs/050608_b.html

STEALTH C-2 and C-3 results

http://www.hepctrust.org.uk/news/2010/May/Nitazoxanide+Increases+Response+to+Pegylated+Interferon+plus+Ribavirin+in+Treatment-naive+and+Non-re

If I wanted to nudge my chances of SVR up, I would definitely be considering Alinia with SOC.

"Based on studies to date, Romark has decided on a nitazoxanide dose of 675 mg using a controlled-release tablets to achieve better bioavailability. This formulation will be further evaluated in Phase 3 trials. Researchers plan to test nitazoxanide with a shorter 24-week duration of pegylated interferon, with and without ribavirin (which helps prevent post-treatment relapse), and in combination with new direct-acting anti-HCV agents. In addition, the AIDS Clinical Trials Group (ACTG) is studying nitazoxanide plus pegylated interferon/ribavirin in HIV/HCV coinfected patients."

That's a heckuvalot of study dollars that have gone into and continue to go into Alinia and for HBV, HIV/AIDS as well.  It's an easily accessible drug, an inexpensive drug and for a Geno 1, non-responder or relapser to be able to add something like that to clearly nudge up SVR rates from what they are on SOC, that's a good thing.

I'll be interested to watch how Alinia interacts with DAA's with regards to SVR rates as well and I'm encouraged that there are plans to study that.
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901131 tn?1293748153
I would just like to say that your husband's one hell of a lucky guy. Your the best!!
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stef2011-
Joe took a probiotic called Culturelle while using the Alinia with SOC last time but unfortunately, it didn't stop the gastro trouble.  He had been taking Culturelle for many months prior to starting the Alinia too.  Joe is generally quite sick on TX anyway so it is pretty hard to say which drug is causing you which problem though.  What you described above sounds very interesting. Thanks for calling my attention to it.

DoraExplora-
I probably didn't state it clearly enough but I wasn't meaning I would add the Alinia to Joe's TX without the Dr.'s consent.  I was just enquiring of his Dr., whether or not it would be do-able because Joe has proven multiple times to be a poor responder to the interferon.  We already know from his last TX attempt,that Alinia increased his response because the first two, without Alinia, didn't even get him a 2 log drop by 12 weeks.  The Alinia did, but he still was unable to become nondetectable, even after 15 months straight.  It is likely going to take more than one DAA to get the job done but I just had hoped that adding the Alinia to the PI might make the interferon response good enough to mop up the remaining virons after the Teleprevir. Joe doesn't qualify for any trials because of cirrhosis, low hgb and low platelets..  Maybe they will found out Alinia is compatable with the Teleprevir.  We will see.  

Eureka- What a wonderful support you are for your husband.  You've been at this a long time now.  There is only one place I know of to derive that kind of strength.
Remembering you,
Ev

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901131 tn?1293748153
Your pretty speacial too!!
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May be the difference between life and death still doesn't make it so.  As stated above, buyer beware but certainly a subject worth discussing with a certified Hepatologist/transplant specialist regarding the efficacy or potential adverse side effects of Alinia in those with cirrhosis or liver cancer.  However, if one truly believes the benefits of Alinia outweigh the risk even without any established data saying yay or nay, that  in my opinion makes it a moot point as well.

With the current standard of care gastro problems occur in many and it appears they can become more severe with Boceprevir.  Adding Alinia could quite possibly cause such severe gastro problems that it would prevent the individual from continuing treatment.  Alinia could be discontinued but having to stop treatment or dose reduce because of an adjunct, even if it's only for a short period of time may be the difference between acheiving SVR or not.  As I see it, the stakes are too high to add unknowns with DAA's, especially when there is no history showing it will enhance treatment but a definate variable that.could be a factor in failure.

The dynamics of treatment change with the addition of a DAA, especially for those with cirrhosis.  When it comes to adding any other agent I would personally feel the need for substantial proof, not just hearsay from self proclaimed experts.
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Evangelin said:" but it probably would increase his chances of Teleprevir getting him an SVR".  

That is what I based my commentary on, however, Evangelin went on to say she didn't think she explained herself sufficiently.  

What I would like to see are statistics relating directly to Alinia and the DAA's before suggesting anyone add it to triple therapy which has been my point all along.

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419309 tn?1326506891
"certainly a subject worth discussing with a certified Hepatologist/transplant specialist"
-----------------------
Exactly what we were discussing amongst each other, or so I thought.  It would be pretty difficult for anyone to add any of these agents without getting clearance from appropriate medical providers, and it seemed pretty clear that WAS the context of the discussion:  the responses we got when inquiring with experts in the field.

"May be the difference between life and death still doesn't make it so....
... the dynamics of treatment change with the addition of a DAA..."
-----------------------------
True on both counts, but may be the dynamic between life and death makes it so that the difference between gastro problems and really bad gastro problems doesn't add up to a hill of beans.

Certainly no-self proclaimed expert, but both my husband and his hepatologist can vouch for Alinia's efficacy and tolerability in terms of adverse events for at least one cirrhotic patient with liver cancer for a duration of 130 weeks.
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419309 tn?1326506891
"As I see it, the stakes are too high to add unknowns with DAA's, especially when there is no history showing it will enhance treatment but a definate variable that.could be a factor in failure."
---------
Which stakes are you referring to as too high?  Failure? As in liver failure?
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419309 tn?1326506891
"Evangelin went on to say she didn't think she explained herself sufficiently. "
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No, actually, she posted "I probably didn't state it clearly enough".  I actually disagree with her statement, though; it was stated clearly enough, I think just insufficiently interpreted.
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> Because Alinia has not been studied as an adjunct with triple therapy or proved to
> be an effective agent which enhances one's ability to acheive SVR I don't see
> how anyone can say it it so, especially this early in the DAA game.

I can easily explain why I'm using (or had been using)  NTZ in a soc tx in which I plan to add a PI after approval: there's no time to wait for proof beyond a reasonable doubt, I have to settle for  educated guesses.

Interactions between a PI and NTZ are speculative. On the other hand what is available today is a very clear understanding of how a PI works, data demonstrating PIs are only effective when coupled with a fairly strong ifn response, and data demonstrating ntz can enhance ifn response. If you want good results from a PI and have a so so ifn response,  you should be doing everything you can to improve it  (eliminating IR/high ferritin, considering SAMe and considering NTZ).  NTZ has been around a long time and is generally considered quite safe ( I wish I had responded better to the gastric sides).

The possibility of some mysterious and still unreported interaction with the protease inhibitor molecules is a remote possibility (always the case  when you combine two drugs) but seems a minimal risk.
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I can't imagine130 weeks of interferon and ribavirin.  The human will to survive surpasses any other species and all understanding.  Given the duration of treatment he has endured so far along with the mortality factor looming over him it is obvious whatever has been thrown his way hasn't added up to a hill of beans in discouraging him from moving forward with whatever options are available.  I respectfully take my hat off to you both and wish you and your husband the very best outcome with whatever path you choose.

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I hope your theory works willing and you achieve SVR.  Your protocol could possibly set a precedence for future treatment with a DAA.  I do understand fear and desperation, it has been a driving force behind much out of the box thinking and innovative techniques which ultimately proved successful in the quest to achieve cures for many diseases.  I am curious to know if there have been any studies in which a DAA has shown to be successful when added at the end of treatment?  

Also, according to what you have stated, I can understand the logic behind NTZ as an adjunct to the current standard of care.  Because I am a skeptic by nature, what I don't understand is why NTZ has not been accepted or become part of the current standard of care to date or is being considered as part of triple therapy by the hepatitis medical community across the board given the following facts:

1.  NTZ has been around a long time
2.  NTZ demonstrates it enhances INF ability
3.  NTZ is generally considered quite safe
4.  NTZ cost is not unreasonable
5.  NTZ would play a pivotol role in helping achieve SVR, even for those who are CT or TT  
     gene.
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If I understand it right, there might be some problem treating a second time with a PI if you are unsuccessful on the first try.  So I would not do anything to jeopardize my chance of clearing the first time on Telaprevir.  I think that's the risk Dora means, the risk that you will fail and not get another chance on the PI.

I think its way to early to expect any doctor to prescribe something else go augment triple therapy.  It sould sure surprise me.
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"What I would like to see are statistics relating directly to Alinia and the DAA's before suggesting anyone add it to triple therapy which has been my point all along. "

Well, fair enough however you jumped in talking about mixing Alinia with DAA's and nobody was really suggesting that and your comment suggested they were.  That was my point.

Now the discussion HAS gone that direction but starting with your own comment.  

And so it goes.
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475300 tn?1312426726
8 hours ago:
by Evangeline
I asked my husband's Dr./P.A. if it would be possible to get Alinia to go with the Teleprevir cocktail as it made his interferon response so much better than without.

I think it was brought up..............just saying
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"Because I am a skeptic by nature, what I don't understand is why NTZ has not been accepted or become part of the current standard of care to date or is being considered as part of triple therapy by the hepatitis medical community across the board given the following facts: "

I think that's actually rather simple.  NTZ is an off label drug that's still in clinical trial for use in treatment with HCV.  It would be very strange indeed to include a drug in HCV SOC that is still in clinical trial for use in HCV treatment.  Not sure it will ever be considered SOC nor does it need to be. SOC would be something that would be used for every patient.  It can be used as an add-in on a case by case basis.  Maybe naive Geno 2 wouldn't feel the need to add Alinia for example but perhaps certain hepatologists would, depending on other factors, such as IL28B, IR, etc.  The fact that it's in clinical trial and showing good results means there is potential for including it as part of individualized therapy when it makes sense.
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419309 tn?1326506891
Thank you for your good wishes.  I do not deny it's always recommended to follow medical protocol, but there are patients who face situations that have no clear cut  guidelines.  Sometimes out of the box thinking is not fear or desperation, but as you point out, just a strong will to survive and win, in conjunction with or in spite of medical studies.  Alinia has the potential to be encorporated to SOC, but seeing that it's only in Phase III trials and has been trumped in terms of timeline and SVR rates by the PIs, the lack of FDA approval at this time for hcv tx , rather than other factors, makes it unlikely the Western medical community will be jumping on board anytime soon, imho.  Like you, most of the medical community, is skeptical and follows protocol.  If we get that far in a few months, perhaps I can report back on how "out of the box" docs can be with PIs added at the end of tx.

lovebird99:
Unfortunately, for previous null-responders or relapse cirrhotics facing end-stage, the concern is not a chance at another PI.
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Yes, brought up....however, I'm inclined to agree with Eureka...insufficiently interpreted.  No matter...the discussion has moved on, hasn't it.  
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475300 tn?1312426726

"No matter...the discussion has moved on, hasn't it."  

Will you let it?
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Hm...seems more a question to be asking yourself at this point. I've already moved on.
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419309 tn?1326506891
The flip side of this discussion would be interesting fodder, too:
considering PIs are increasing the SVR rates for relapsers and null-responders but not as significantly as naives... and there are considerable higher risks with PI use than with Alinia use (which has been approximated to improve SVR by 10% in previous g1 non-responders...)

Perhaps they'll be takers of Alinia+SOC as a 1st attempt, especially if they're CC or CT, and PIs as a 2nd try? Just saying...
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If it's not too much trouble could you please explain what your interpretation of Evangelin's statement " but it probably would increase his chances of Teleprevir getting him an SVR" because I took "it" to mean Alinia so I find it unreasonable of you to accuse me of jumping in and changing the direction of the discussion.  You know what my reply to that was because you quoted me. Evangelin later clarified her comment on another post so my other question to you is.... ideally, in what direction do you think the conversation should have gone?

After all, despite how you see it, this is a discussion group and we're all here to learn and toss out our thoughts.  As far as I know my comments do not have to meet your approval or that of anyone else.
__________________________________________________________________________

Lovebird, you are exactly right.  Developing a resistance to a DAA should be a big big concern, especially for those with cirrhosis.    
  


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419309 tn?1326506891
May I request that you not take the trouble?
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419309 tn?1326506891
Appears somewhat that the favor Alinia had 2 or 3 years ago is being eclipsed by PIs, DAAs and other up and comers.  The new technologies of targeted therapies has the spotlight and certainly has the potential to steal the show if approved, but if the FDA drags its feet on approval it's possible more hepas will start looking back on Alinia with more interest.
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It's not too much trouble but seems rather pointless.  I'll respectfully decline to continue on that particular point any further.  It seems a bit pointless to continue to debate on what Ev meant or didn't mean...and who is right about it. Opinions aren't right or wrong, they're simply opinions  We see it differently.  I'm good with that.

As for comments meeting approval and all that....I find this beginning to get personal and  argumentative for no good reason.  As you say, we're here to toss our thoughts and learn. Taking it personally when someone has a different point of view than you is counter-productive in my opinion.  Not interested in pursuing this line of discussion with you.
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LOL - I only saw your comment after I posted saying I wouldn't be taking the trouble. :)  Your request has been met. :)
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The bonus that Alinia has over the PI's is perhaps cost.  The PI's will not be cheap and may not be accessible to everyone.  I know when I was getting ready to do SOC, I was starting to look into bringing Alinia in from Mexico as it's an OTC there - ending up in a clinical drug trial instead brought any further efforts to a halt.  If you can get it as an OTC in Mexico, then I'm thinking it's not very expensive here?  If someone could post how much it does cost, I'd appreciate knowing.  Thanks.
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You put me in a position where I felt I needed to defend myself by stating I jumped in and inititated the dissusion of mixing Alinia with the use of a DAA and you further commented that no one was suggesting that.  If you interpret me asking why you made that statement and expressing to you that I don't have to seek approval as personal and arguementative then you're right, no further discussion is necessary.
In no way did I see it as a case of right or wrong, agreeing or disagreeing, just a question based on my observation which I felt merited an explanation. Because of your last response I feel exactly the same way, any discussion regarding this matter would be pointless.
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419309 tn?1326506891
Fortunately if that option were to present, PI added to Alinia and SOC, my husband's current rx coverage is great: as long as the doc writes the script, no cap on cost, just a reasonable co-pay.  I know everyone will not be as lucky, but at least cost is not a deterrent.  

I'll have to dig for the out-of-pocket cost of Alinia tomorrow (buried somewhere in the monstrous pile of rx papers) if no one else pipes up with good info.  What the cost of PIs and DAAs is anyone's guess...
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I'm relieved for your sake that the financial cost regardless of what they'll be appear to be manageable. Lord knows the challenges are sufficient aside from that. When you have time, on the Alinia costs.  I could look it up at the online pharmacies also, it just occurred to me.  Cost and availability of PI's and DAA's is the big question mark, isn't it.  And we shall see.  
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http://clinicaltrials.gov/ct2/show/NCT01135628

i have started from here, then searched all studies on lactobacillus reuteri which looked one of the most potent on gut/immune function and then tried it, it is very expensive here 15euro per box but it worked

i also tried
http://www.galenotech.org/erborist/Enterogermina.pdf
worked too but a little less than reuteri

i tried couple of others that didn t work at all, don t remember the names

i guess that every combo with interferon can benefit from alinia since it henances interferon response.interference with antivirals should be very very unlikly, there are in vitro studies on it, i guess contacting romark directly can help on this


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Thank you!
Several years ago, when Joe was taking Alinia, I asked the Pharmacy Dr. at Romark if he thought  using a probiotic would help the gastro trouble, he didn't think so then.  The Hepatology Researcher that use to frequent Medhelp thought it would be important, and I  went with his recommendation to use probiotics.  He was recommending the Culturelle brand at that time, because it had undergone a lot of research showing it  to make it all the way through your body.  I guess many aren't effective because the digestive juices destroy it.  I'm not a good scientist and only can get the overall outlook but my terminology isn't the best.  
I will be reading over the information you pointed out.  Even if we never use Alinia again, probiotics are important in their own right.
I appreciate your help,
Ev
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forgot to menthion also PPC in heptoshield stopped any gastro disturb but i think this supplement is not good with interferon
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Actually, there is at least one good study that has been posted in the past, showing a good result with PPC being used with interferon.  It was posted by HR (Hepatitis Researcher)  I can't remember right now if Ribavirin was used in the study or not.  It was from quite a while ago. I haven't heard of anything recent.
Joe did take it some of the time on his last TX but it got hard to afford with all the other draining expenses we had at the time so we let it go.  He started right back on it after TX failed, and still takes it now.  
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nicely worded post re the 130 -  makes me wish I had a hat to take off - and thanks for the good wishes.

As far as I know there are 4 main sources of data of ntz in g1s:
stealth-C2, stealth-C3 and the Basu EASL10 study. A recent free access review by Prockros includes ntz citations:
http://www.ncbi.nlm.nih.gov/pubmed/21180601

For G1s NTZ is no silver bullet,  nevertheless it shows a consistent improvement among hard to treat patients.  My hepa was  dismissive, saying 7-8% improvement in odds at best. Fortunately my PCP was more accommodating. Personally, I'll take the  small improvement. Same with SAM-E - no silver bullet but it clearly seems to improve response. Same with high dose RBV.

One thing you learn as you go around the block is that the standard of care is designed to optimize the average outcome. This is good for the overall health care system but does not necessarily help one as a patient. The PI must still do the heavy lifting but anything that safely improves one's  ifn response is worth considering.

Re adding the PI late, as mentioned in an earlier post, there's no data I know of. Nevertheless, PI monotherapy has been shown to consistently knock VL down a couple of log units within days. As shown in a study Bali posted recently, relapse is due to getting to eot with too many remaining  infected cells. If you can knock your remaining virus down by between 99% and 99.9% it seems reasonable to expect relapse odds will diminish.
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419309 tn?1326506891
Regarding the cost of Alinia, without rx coverage we'd be paying about $1200 every 4 weeks -- certainly not what I'd consider affordable on a modest income...
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No....not so affordable as I thought. :(   What is the daily dosage please?
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419309 tn?1326506891
He followed the Phase III trial protocol that was running at that time, 500mg at 12 hour intervals.  We had considered trying to enroll in the Alinia trial, as his treating doc was also recruiting for it at the time, but as a cirrhotic with hcc history he wasn't considered a good candiate for hcv trials, plus we found it wasn't worth the risk to be at the mercy of trial guidelines since doc was willing to prescribe it off label.
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The link below, posted by Mike716, lists several online pharmacies that sell generic alinia.  I hope that this helps



http://www.medhelp.org/posts/Hepatitis-C/Alinia-Nitazoxanide-Sources/show/1124364
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Thanks for that.  I'll look that over.  I'm SVR myself btw..but not everyone I know.  Thanks again, much appreciated.

Trish
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we use the generic version in hbv comm (we tested lupin generic and it was better quality than romarks), a member in florida got it at a lupin distro pharmacy with prescription.
generic is about 200usd for 180 pills but the price varies so much both at lupin distro pharmacies and online

in india the cost at the pharmacy for 1000pills is about 100usd, having a friend there can be very helpful...this is the only way i can afford 4pills a day
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419309 tn?1326506891
I wondered if you might have any additional information about the trial you mentioned using Alinia to treat hepatic encephalopathy?  Wondering if you might know what was used and the results of that trial; anything you could point my way would be much appreciated.
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still recruiting, it is a combo of alinia+lac.reuteri.alinia lowers bacteria and reuteri balance the good bacteria, very early to know outcome but these are all approved drugs so you might try them for soemtime and see if you get improvment

i have to say that i got the best improvment of life quality when i used heptech full pack products but i had to stop them because they also lower immune function during immune modulators like alinia or interferon

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419309 tn?1326506891
I'll have to look into the current research and trials... thank you for the additional information.
I wish you best of success with your Alinia treatment... I hope it proves to be helpful for hbv as well!
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